A descriptive study of the psychosocial impact of AIDS on family caregiving

Abstract

The purpose of this qualitative ethnography was to describe the psychosocial impact experienced by family caregivers residing with a person living with AIDS (PLWA). The purposively selected informants consisted of seven family caregivers, four female and three male, between the ages of 29 and 74. Face to face, semi-structured interviews guided by an ecletic model of social support, constituted the primary data collection method. The constant comparative method of data analysis was employed to identify the main categories and themes. As prescribed by Patton (1990) and Field and Morse (1991), the interviews were transcribed verbatim, coded and analyzed to discover themes and categories. The major themes and categories are exemplified by "thick description" using verbatim quotations. The findings reflect the psychosocial experience of AIDS family caregivers as work. This work is further defined by the themes and categories of (1) Monitoring: Surveillance, Vigilance, and Hypervigilance; (2) Letting In: Becominga Caregiver: Engaging the PLWA, Engaging the Caregiver, and Mutual Engaging; (3) Labouring the Emotions: Labouring in Exile, Labouring of Losses and Labour of Uncertainty; (4) Protective Labour; and, (5) Caring Transformations: Discovery of Self Perspective and Discovery of System Perspective. The study may contribute towards a framework for preventative, supportive and therapeutic interventions with family members living with a PLWA in the community. Several implications for nursing education, practise and research are noted. Implications for nursing education suggest the need for basic nursing curricula to address concepts of family comp sition, caring and support. Implications for nursing practice suggest a need for a case managed, family centred approach to caring for a PLWA within tertiary and community settings. Studies on interventions to promote healthy transitions along the family AIDS caregiving trajectory are recommended for further research. The support of the Health Science Research Foundation is gratefully acknowledged.